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strips

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
That's not to say, of course, that a different collection of people reviewing the same evidence might not have come up with a different interpretation. If all of the group had firmly believed one thing they may have found a way through the negative RCTs - but that is not what is supposed to happen. The purpose of the GDG is to find the most likely best-use of resources based on the available evidence.
 
everydayupsanddowns said:
I'm not sure how you can dismiss someone's contribution so easily. Since neither you nor I were in the meetings I suggest both of us would be guessing.

What I was trying to clarify is that whatever Natasha's personal opinion, passion, commitment or otherwise about the use of test strips in T2 for those on D&E/Metformin... however voiciferously she argued (or didn't)... what mattered is what the combination of the evidence (both for and against) said. The results of the research trials. All those in favour... and all those that found little benefit. Combined and meta-analysed. Weighted for large trials and smaller trials. What the evidence said on balance - even if we wish it said something else.
Click to expand...

Didn't realise I was dismissing anyone's contribution ( I thought that was what you were trying to do with mine) more a case of trying to ascertain what the contribution actually was.
 
Apologies Bill, I had not intended to upset you. I think I misread when you posted

Bill Stewardson said:
About Natasha's input ?? Would I be correct in assuming there was none ?
Click to expand...

to mean that you thought she had no input, even though she was part of the GDG.
 
everydayupsanddowns said:
Apologies Bill, I had not intended to upset you. I think I misread when you posted



to mean that you thought she had no input, even though she was part of the GDG.
Click to expand...

No problem at all, now then,

Things are finally starting to move. It has been confirmed to me that the piece I wrote will definitely be in one paper next week- possibly two- I have a meeting with the local D group on Aug 17th, Ive had an Email from somebody at the local CCG, a meeting with the local surgery on Aug 15th, have asked for a meeting with my local MP, and I'm awaiting replies from several other avenues I'm looking at. Also Ive applied to join the practice patient participation group.( can YOU do that?).

A local D group organiser was totally unaware of this "strips" situation, he now says they "have work to do" which seems positive.

Key thing is that there is reaction to the article, then I can expand and try to raise public awareness.

It really would be a huge boost if I could put forward that DUKs view is that Ds
should be offered the option of self testing at no expense. (that does not have to be as binary as it first seems).

I am not about rubbishing DUK or anyone else, the hill is steep, I need help to climb it.
 
Bill Stewardson said:
No problem at all, now then,

Things are finally starting to move. It has been confirmed to me that the piece I wrote will definitely be in one paper next week- possibly two- I have a meeting with the local D group on Aug 17th, Ive had an Email from somebody at the local CCG, a meeting with the local surgery on Aug 15th, have asked for a meeting with my local MP, and I'm awaiting replies from several other avenues I'm looking at. Also Ive applied to join the practice patient participation group.( can YOU do that?).

A local D group organiser was totally unaware of this "strips" situation, he now says they "have work to do" which seems positive.

Key thing is that there is reaction to the article, then I can expand and try to raise public awareness.

It really would be a huge boost if I could put forward that DUKs view is that Ds
should be offered the option of self testing at no expense. (that does not have to be as binary as it first seems).

I am not about rubbishing DUK or anyone else, the hill is steep, I need help to climb it.
Click to expand...

Great to see that you have been taking so much action on this. I will be offline for a few days I'm afraid but perhaps @Stefan Diabetes UK can offer you some support with campaigning and raising awareness? It sounds like it would also be helpful for you to contact your regional team Bill. I'm not sure where your based, but you can find the contact details for your regional team here: https://www.diabetes.org.uk/In_Your_Area/
I'm sure they would be happy to offer support on a local level.

Best of luck!
 
Hannah DUK said:
Great to see that you have been taking so much action on this. I will be offline for a few days I'm afraid but perhaps @Stefan Diabetes UK can offer you some support with campaigning and raising awareness? It sounds like it would also be helpful for you to contact your regional team Bill. I'm not sure where your based, but you can find the contact details for your regional team here: https://www.diabetes.org.uk/In_Your_Area/
I'm sure they would be happy to offer support on a local level.

Best of luck!
Click to expand...

Thanks Hannah, yes happy to help if we can and great to see you've already made so much progress. Have sent you a message with my contact details Bill 🙂
 
Bill Stewardson said:
No problem at all, now then,

Things are finally starting to move. It has been confirmed to me that the piece I wrote will definitely be in one paper next week- possibly two- I have a meeting with the local D group on Aug 17th, Ive had an Email from somebody at the local CCG, a meeting with the local surgery on Aug 15th, have asked for a meeting with my local MP, and I'm awaiting replies from several other avenues I'm looking at. Also Ive applied to join the practice patient participation group.( can YOU do that?).

A local D group organiser was totally unaware of this "strips" situation, he now says they "have work to do" which seems positive.

Key thing is that there is reaction to the article, then I can expand and try to raise public awareness.

It really would be a huge boost if I could put forward that DUKs view is that Ds
should be offered the option of self testing at no expense. (that does not have to be as binary as it first seems).

I am not about rubbishing DUK or anyone else, the hill is steep, I need help to climb it.
Click to expand...

Hi @Bill Stewardson, I'll pick up from where Hannah left off as she is going to be offline for a few days.

Natasha Marsland kindly got back to me with her statement regarding the meeting which I've included below:

'My role on the guideline committee was as a patient representative to put forward the views and experiences of people living with diabetes. It was made very clear to be that it was not to put forward the views of diabetes UK and I was not in any capacity representing healthcare professionals .

A patient representative had equal status on the group made up of GPs, Practice nurses, Consultants, Diabetes Specialist nurses and another patient representative.

Having been the clinical lead for the production of our position statements on the self monitoring of blood glucose in 2013 and in the updated version 2016 I am very much aware that so many people with Type 2 diabetes find testing their blood glucose levels so beneficial. We ran a focus group of people with Type 2 diabetes to obtain their experiences and our council of people with diabetes were consulted at all stages in their production to obtain and incorporate their views.

Unfortunately the RCTs (randomised controlled trails) simply did not show sufficient improvement on the SMBG arm to recommend strips for everyone which as a patient representative I found extremely frustrating as I know so many people with Type 2 diabetes have reported benefits.

Therefore our position statement, which as stated I led on, differs very much to that of the NICE guidance and we certainly recommend if people are experiencing difficulty accessing testing equipment they refer to this statement and bring it to their healthcare team’s attention and also use our advocacy service.'

You can have a look at our position statement here: https://www.diabetes.org.uk/Profess...ucose-levels-for-adults-with-Type-2-diabetes/
 
Emma Diabetes UK said:
Hi @Bill Stewardson, I'll pick up from where Hannah left off as she is going to be offline for a few days.

Natasha Marsland kindly got back to me with her statement regarding the meeting which I've included below:

'My role on the guideline committee was as a patient representative to put forward the views and experiences of people living with diabetes. It was made very clear to be that it was not to put forward the views of diabetes UK and I was not in any capacity representing healthcare professionals .

A patient representative had equal status on the group made up of GPs, Practice nurses, Consultants, Diabetes Specialist nurses and another patient representative.

Having been the clinical lead for the production of our position statements on the self monitoring of blood glucose in 2013 and in the updated version 2016 I am very much aware that so many people with Type 2 diabetes find testing their blood glucose levels so beneficial. We ran a focus group of people with Type 2 diabetes to obtain their experiences and our council of people with diabetes were consulted at all stages in their production to obtain and incorporate their views.

Unfortunately the RCTs (randomised controlled trails) simply did not show sufficient improvement on the SMBG arm to recommend strips for everyone which as a patient representative I found extremely frustrating as I know so many people with Type 2 diabetes have reported benefits.

Therefore our position statement, which as stated I led on, differs very much to that of the NICE guidance and we certainly recommend if people are experiencing difficulty accessing testing equipment they refer to this statement and bring it to their healthcare team’s attention and also use our advocacy service.'

You can have a look at our position statement here: https://www.diabetes.org.uk/Profess...ucose-levels-for-adults-with-Type-2-diabetes/
Click to expand...

Many thanks for the above, and please pass on my thanks to Natasha.

Out of courtesy, does anyone at DUK object to me using that, and other statements, in any of the upcoming meetings that I will be having ?
 
Bill Stewardson said:
Many thanks for the above, and please pass on my thanks to Natasha.

Out of courtesy, does anyone at DUK object to me using that, and other statements, in any of the upcoming meetings that I will be having ?
Click to expand...

@Bill Stewardson Glad this proved helpful!

Our position statements are public so there's no problem in using them at meetings etc as it is a reflection of what we believe!

Please keep us updated on how your meetings are going and if there is anything else we can support you with
 
everydayupsanddowns said:
Sorry Dave! Your thread seems to have wandered off-topic into the dark and shady recesses of the technicalities of NICE.

As others have said, you should absolutely NOT take this as a done deal. Clinical care is supposed to be based around "no decision about me, without me" so you need to go to see your GP again and explain how this decision will negatively impact you and your self care.

Be prepared to explain how you are using the information that self-monitoring gives you. Especially if you can give specific examples of foods that have been recommended to you that you have discovered your body cannot tolerate.

You may find there is resistance to your testing 6x a day (because it is a very intensive testing regime, much more often seen in people using multiple insulin doses what need to be adjusted at each meal) so you need to be able to explain why it helps and why you choose to check BG when you do.

Be prepared to be flexible in your approach - if you feel you can reduce the number of BG strips needed after a period of intensive testing that will make it easier for your GP (lots of checking for 6 months while you test out different foods, then drop back to fewer strips just to occasionally check things aren't drifting or around new food items/illness).

If that isn't going to suit you you will need to be able to clearly explain why you need what you need. Why 6x? Why not 4x? Or 6x but only every other day... What is it about your life/work pattern/exercise pattern/etc that makes your checks important.

How much variation do you see? What do you do when you see it? What will you not be able to do without that flow of information?

I don't need the answers to those questions - but getting your own head around those things will help you put together a good argument as to why SMBG works for you as an individual.
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thanks for your comments....I am testing six times a day because I can print the results to show them to the surgeon when I go to have my ne knee replacement on the 14th August after being sent home on the 6th July with bs of 10.4... after the op I will scale down on testing..... but for now I can print all the readings from the 7th July until now to prove that my diabetes is under control.
regards
Dave
 
I ran the "strips" issue in a local news/discussion forum. Overwhelmingly people see hampering any D in managing their condition as a backward step.

The local CCG have indicated they will hear me out, not sure when, they are bi monthly meetings.

Should be interesting.
 
Bill Stewardson said:
I ran the "strips" issue in a local news/discussion forum. Overwhelmingly people see hampering any D in managing their condition as a backward step.

The local CCG have indicated they will hear me out, not sure when, they are bi monthly meetings.

Should be interesting.
Click to expand...
Good stuff Bill. Hope you can make progress with your CCG - you could positively affect the lives of lots and lots of people.
 
Bill Stewardson said:
I ran the "strips" issue in a local news/discussion forum. Overwhelmingly people see hampering any D in managing their condition as a backward step.

The local CCG have indicated they will hear me out, not sure when, they are bi monthly meetings.

Should be interesting.
Click to expand...
Thank you Bill. I wish you great success
 
Ok,,, here's where you get into this.

Up to now general opinion, gathered from my dabbling round here is massively leaning towards it being unwise to deprive Ds of the means to be aware of their BG levels. It has to be said that this is mainly among Ds.

This really does not carry much weight in the big wide world. The reward lays with those outside of the D bubble.

Maybe the newspaper article being published tomorrow will affect that, more likely those who read it (about 70 000) will forget it within a couple of hours.

So, Ive contacted radio stations, telly stations, various magazines and the press at national level. Addd to that the local CCG will hear me, and the local D group say they "have work to do", also I have contacted the DVLA for their view on the issue and I await their reply. All well and good but limited in scope, most of them will not pick it up.

DUK states that it has 13000 members, though I doubt that 40 use the forum on a regular basis, but, 40 is a lot more than one (me) and I fully understand that not everyone wants to be involved in actively doing this sort of stuff. Those 40 are spread around the country,some far beyond, and my brain gets polluted with all sorts of rubbish, football, guitar, upcoming surgery, and the bloody cat dragging birds through the flap in the door.

I would appreciate suggestions, or info regarding any other efforts that are being made to bolster the longevity of this drive.

Nobody else is going to do this, cancer patients are being denied drugs, IVF programmes are being maligned, cuts cuts cuts with more to come.
D can very easily fall way down the pecking order.

Lets not allow that to happen.
 
Bill Stewardson said:
No problem at all, now then,

Things are finally starting to move. It has been confirmed to me that the piece I wrote will definitely be in one paper next week- possibly two- I have a meeting with the local D group on Aug 17th, Ive had an Email from somebody at the local CCG, a meeting with the local surgery on Aug 15th, have asked for a meeting with my local MP, and I'm awaiting replies from several other avenues I'm looking at. Also Ive applied to join the practice patient participation group.( can YOU do that?).

A local D group organiser was totally unaware of this "strips" situation, he now says they "have work to do" which seems positive.

Key thing is that there is reaction to the article, then I can expand and try to raise public awareness.

It really would be a huge boost if I could put forward that DUKs view is that Ds
should be offered the option of self testing at no expense. (that does not have to be as binary as it first seems).

I am not about rubbishing DUK or anyone else, the hill is steep, I need help to climb it.
Click to expand...
To which newspaper are you referring?
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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